WELCOME

Regional Healthy Start Meeting AZ, CA, NM, TX August 10 - 11, 2017

AGENDA 2017 Regional Healthy Start Meeting – AZ, CA, NM, TX

Day 1- August 10, 2017 Day 2 – August 11, 2017 • Welcome, Purpose, and Logistics • Get Moving Activity • Introductions/Icebreaker • Welcome back/Day 1 Recap • DHSPS Updates & Priorities • Assessing Impact and Building • EPIC Center Updates Sustainability Part 1 • HS CoIIN Update • HS Screening Tools: Insights, • Host Grantee Presentation Strategies, and Tips • Networking Lunch • Networking Lunch • Productive State Data • Grooming for Leadership: A call Partnerships to action for all staff and • Partners’ Panel program participants • Assessing Impact and Building • Closing Sustainability Part 1

3 Introductions and Icebreaker Vanessa Rodriguez, MPA, CNP San Antonio Healthy Start

4 DHSPS Updates and Priorities Madelyn Reyes, MA, MPA, RN Sonsy Fermin, MSW, LCSW Division of Healthy Start and Perinatal Services

5 Division of Healthy Start & Perinatal Services

Regional Meeting Updates

HEALTHY START REGIONS VI & IX REGIONAL MEETING AUGUST 10-11, 2017 SAN ANONIO,

Division Updates

• Women’s Preventive Services Initiative (WPSI) • Advisory Panel planning to implement recommendations into practice • Send suggestions to [email protected]

• Alliance for Innovation in Maternal Health (AIM) • Maternal Health Safety Bundles: http://safehealthcareforeverywoman.org/patient-safety-bundles/ • Kick off meetings in (August) and (September)

• Contact: Kimberly Sherman, Women’s Health Specialist, [email protected]

7 Division Updates

• Behavioral Health (Mental Health and Substance Abuse Issues) • FASD webinar series available on EPIC website • Quick Start List on opioid and behavioral health resources available on EPIC website (under Training  Ask the Expert  Intro to FASD…) http://healthystartepic.org/event/introduction-to-fasd-screening-and-diagnosis/ • Contact: Dawn Levinson, Behavioral Health Lead, [email protected]

• Perinatal Health • Breastfeeding community workshops available • CLC certification training applications due June 30th • Contact: Sharon Adamo, Perinatal Health Specialist, [email protected]

8 *New* IM CoIIN Funding Opportunity (HRSA-17-105)

• HRSA-17-105 Collaborative Improvement and Innovation Network on Infant Mortality (IM CoIIN) was released on May 31, 2017 in Grants.gov

• Application closed on July 17, 2017

• Contact Vanessa Lee, Project Officer, at [email protected] with questions

9 Healthy Start Program Updates

• April 1st grantees • FFR was due July 30th • Carry over requests

• November 1st grantees • Consider re-budgeting • Progress report due July 19th

• HSMED monthly status reports (due on the 15th of each month)

10

Healthy Start Program Updates

• Upcoming webinars • August 17th (1:00 – 2:30 pm): Conversation with the Division • September: New project director orientation

• CityMatCH Conference: September 19 – 20, 2017 in Nashville, TN

11

Healthy Start National Evaluation

• Spanish screening tools have been IRB approved

• Approval of data use agreements (DUAs) is in progress

• PRAMS oversampling has begun

• Abt/NAPHSIS continue to communicate with PRAMS, VROs, and grantees

• HRSA continues to work with local IRBs when needed

• Contact: CAPT Robert Windom, Senior Public Health Analyst, [email protected]

12 Healthy Start Data Reporting

• Aggregate-level data reporting • Reporting template available on EPIC website: http://healthystartepic.org/healthy-start-implementation/monitoring-data-and- evaluation/ • Send to Healthy Start Data Mailbox: [email protected] • Due on the 10th of each month

• Client-level data reporting • Report to HSMED: https://healthystartdata.hrsa.gov/hslogin/admin/login.aspx • Due starting on the 10th of each month, but no later than the end of the month • If not reporting, must complete monthly status update • NOTE: initial upload includes data reported for previous CY 2017 months.

• Contact: CDR Chris Lim, Senior Public Health Analyst, [email protected]

13 Healthy Start Grantees

REGION VI La Clinica de Familia Inc. • Jonah Garcia, Project Director, [email protected] • Level 1

Ben Archer Health Center, Inc. • Kara Bower, Project Director, [email protected] • Level 1

Healthy Start Grantees

REGION VI Texas BCFS Health and Human Services • Araceli Flores, Project Director, [email protected] • Level 1

University of North Texas Health Science Center at Fort Worth • Amy Raines-Milenkov, Project Director, [email protected] • Level 1

Healthy Start Grantees

REGION VI Texas (continued) Dallas County District • Karla McCoy, Project Director, [email protected] • Level 2

San Antonio City Department of Finance • Kori Eberle, Project Director, [email protected] • Level 3

Healthy Start Grantees

REGION IX Mariposa Community Health Center, Inc. • Yara Castro, Project Director, [email protected] • Level 1

Maricopa County Health Department Health • Meloney Baty, Project Director, [email protected] • Level 3

Healthy Start Grantees

REGION IX County of Fresno. • Ah Vang, Project Director, [email protected] • Level 1

Shields for Families Project, Inc. • Kathryn Icenhower, Project Director, [email protected] • Level 1

Healthy Start Grantees

REGION IX California (continued) Alameda County Health Care Services Agency • Anna Gruver, Project Director, [email protected] • Level 3

Project Concern International • Maria Lourdes Reyes, Project Director, [email protected] • Level 3

Contact Information

CAPT Madelyn Reyes, DNP, MA, MPA, RN CDR M. Sonsy Fermín, LCSW, MSW Senior Nurse Consultant Senior Public Health Analyst Telephone: (301) 443- 9992 Telephone: (301) 443- 1504 Email: [email protected] Email: [email protected]

5600 Fishers Lane, Room 18N92C Rockville, MD 20857

20 THANK YOU!!!!! EPIC Center Updates Kimberly Bradley, MPH, MNM Healthy Start EPIC Center

22 Healthy Start EPIC Center Regional Meeting Update

August 10, 2017 Healthy Start EPIC Center Staff Purpose of the Healthy Start EPIC Center

To build capacity of Long Term: To create a sustainable,Healthy Start national grantees home for the Healthy Start knowledgebaseto achieve programavailable to all communities.goals defined by the 5As and Benchmarks.

EPIC Center Highlights

• 68% of grantees have received technical assistance

• 55 webinars conducted and archived on the website

• 20 community trainings conducted Topics include social media/marketing/outreach, motivational interviewing, trauma informed care, reproductive life planning, early language and literacy, and breastfeeding.

• 10 e-learning modules on Community Health Worker (CHW) Competencies

• 42 scholarships to Healthy Start staff to attend a 5-day Certified Lactation Counselor (CLC) training course Resources

Website: www.healthystartepic.org ▪Searchable map of grantees, FQHCs, FIMRs, data ▪Searchable database of 160+ Evidence–Based Practices (EBP) ▪Online recorded webinars and trainings ▪Links to organizations and resource ▪Project Management Hub Notable New Initiatives

Screening Tool Implementation: webinars, TA, FAQs on healthystartepic.org City MatCH: Save the Date – Sept. 18-20 Alcohol and Substance Exposed Pregnancy Prevention (AStePP) Initiative: grantee discussion groups, webinars, webpage, Opioid and Behavioral Health Quick Start List, community trainings, Mental Health First Aid training, multimedia e- learning course, and advisory panel

Healthy Living Initiative

Why this Healthy Living initiative? Everyone - participants and staff - should be supported to be healthy, both physically and emotionally.

What the initiative will include: • 4 part webinar series, topics to include: Taking a Landscape View to Healthy Living, Healthy Eating, Active living, Stress Reduction and Mindfulness • Community Workshops Have a story to share? Want to provide input? Join the Grantee Advisory Group! Email [email protected] or talk to EPIC today.

Energizer! Break Time!

30 Healthy Start CoIIN Update Kori Eberle, MS San Antonio Healthy Start

31 Healthy Start Collaborative Improvement and Innovations Network (CoIIN) Update

August 2017 HS CoIIN Overview Healthy Start CoIIN Role and Responsibilities • Membership mandated for level 3 grantees and invited representation from Level 1 and 2 grantees. • Functions as an Expert Panel on behalf of HS Grantees. • Promotes communication among/between grantees, DHSPS and HS EPIC Center to ensure all grantees have a voice in setting the direction for HS. • Disseminates standardization recommendations and lessons learned to the HS community. • Promotes HS as an effective and vital community based resource in all communities to ensure the long-term success of HS.

HS CoIIN Communication Strategy

Goals developed in collaboration with the Division are to support HS CoIIN members’ ability to: • communicate key issues related to the role of the CoIIN, topics discussed and decisions made in a consistent manner; and • solicit input and feedback from all HS programs and colleagues to inform the CoIIN discussions. …with the intended outcome of enhancing communication with Bureau, Division, and Grantees. Standardization Priorities Overview Principles of the CoIIN’s Standardization Work

• The initial step toward standardization is establishing a shared understanding of care coordination/case management across the HSCoIIN. • Establish common definitions of care coordination and case management as a foundation for any other steps in standardization. • Care Coordination/Case Management is the foundation of re- framing Healthy Start as a system of care: • to ensure sustainability of the program in order to mobilize more communities to create more equity for our families in need. • ensure care coordination and case management are rooted in the community, are multidisciplinary: address linkages and referrals; include a family centered approach; incorporate advocacy and a cultural focus.

Overview of CoIIN Priorities (Adopted March 2015)

Data Collection Data collection and integration with evaluation & monitoring requirement: Standardize data collection (including benchmarks) and reporting to support monitoring and evaluation Screening Tools Care Coordination Screening Tools and Care coordination and case Processes: management: Ensure comprehensive and Define components and consistent assessment of best practices of care participants’ needs. coordination and case management

Standardization Building a Stronger Healthy Start Program Through Standardization

Why standardize Healthy Start? Provides a consistent, predictable, and replicable experience for Healthy Start participants designed to achieve positive health outcomes. What Does Standardization Mean?

“Today’s standardization is the necessary foundation on which tomorrow’s improvement will be based. If you think of standardization as the best you know today, but which is to be improved tomorrow, you get somewhere. But if you think of standards as confining, then progress stops.” ~Henry Ford 1926 Screening Tool Development Method of Standardizing the Screening Tools

The tools designed by consensus of the HS CoIIN members, identify risks and needs based on the literature and HS performance measures. HS CoIIN defined screening and assessment in order to develop tools that could be used by staff with a range of skill levels. Development of the Screening Tools influenced by concurrent activities which the CoIIN was asked to engage in: . development of the data dictionary to establish definitions for each of the benchmarks required through the HS Grantee FOA released in 2014; . the Office of Management and Budget (OMB) approval of the Divisions’ evaluation tool (the 3 Ps Document); . the release of the FOA for developing a data collection database for the National HS Evaluation. Screening Tool Development: Guiding Principles The Screening tools would: . serve as the foundation for care coordination and case management approach. . address comprehensive risks for each perinatal period. . align with the HS performance measures. . provide a minimum requirement, but can be expanded by HS programs. . adapt screening questions from existing evidence- based screening tools. HS Program Elements to Demonstrate Impact

• The HS screening tools: • allow documentation of care coordination such as information or education, specific services, or referral for ongoing services beyond the program. • align with other MCH Bureau measurements (reducing duplication of data collection efforts). • informed the development of the screening and assessment module as part of the HS Community Health Worker curriculum. • Training is the initial step to implementing the Screening Tools.

Support for Screening Tool Implementation Screening Tools Training and TA Activities

1. Screening Flowchart Updated.

2. Website Updates.

3. FAQs.

4. Webinar: Talking Participants through the Healthy Start Screening Tools.

5. Job Aides: HS Screening Tools Health History: A Reference for Medical Conditions and Medications.

6. Updated definitions: • initial Screening • update Screening Questions • re-screening

7. Panel Webinar: Five months of HS Screening Tools Implementation: Grantee Best Practices, Barriers, and Resolutions • How to efficiently facilitate accurate data collection at your Healthy Start site.

In Progress…

1. Recorded Training Module: Using the EPIC Online Screening Tool.

2. A panel presentation at CityMatch addressing: Standardized Screening Tools Are Changing the Way We Do Business.

3. Capturing feedback on screening tool implementation.

Lessons Learned from Screening Tool Development

• Have a mixture of large group and small group work to more efficiently address initiatives. • Build in more frequent feedback opportunities from all grantees to manage workflow of each CoIIN work group. • Recognize the diversity of approaches of Healthy Start programs and reinforce the need for standardizing certain components while honoring the uniqueness of each program. Alignment of CoIIN Screening Tool Questions with other MCH Bureau Measurements:

The data collection and reporting initiative so far: • drafting concise definitions for the Healthy Start performance measures; and • aligning data collection with the national evaluation, as encapsulated within the screening tools.

The Data Collection and Reporting Initiative

Other areas of assistance provided to support data collection and evaluation: • EPIC provided assistance to grantees with ChallengerSoft and ETO to support group negotiation to: . reduce cost of integrating screening tools into existing software programs that can generate data submission for evaluation to DSFederal. . improve efficiency as tools are modified over time. . the initial phase of negotiation focused on existing users: . 24 for ChallengerSoft and 12 for ETO . the negotiations have concluded, and contracts are available to other grantees upon request. • Developed an electronic reporting tool to support grantees in collecting and reporting data.

Care Coordination/Case Management CoIIN CC/CM Initiative

Policies and Protocols Workgroup Data Sources Workgroup Literature Review Workgroup

Begin documenting and describing 1) Operationally define CM and CC, Review current literature to provide common components and gaps in highlight distinctions if they exist, and context to the findings of the Data CC/CM across grantees through identify alternative terms to guide the Sources Workgroup. review of current grantee Literature Review and Data Sources applications and currently available Workgroups, and The outcome for the literature review data sources to inform the will support current CC/CM HS best development of any additional data 2) Establish best practices for CC/CM practices and address identified needs and to provide guidance for related to providing MCH services. gaps. the Literature Review Workgroup.

Members: Members: Members: Lo Berry (Lead), Anna Gruver, Sara Kinsman (co-leads) Dianne Browne, Mary Alexander, Tara JoAnn Smith, Megan Young, Rick Debby Allen, Maxine Vance, Maria Schuler, Andrea Kimple, Lisa Greene, Anna Colaner, and Risë Lourdes Reyes, Julie DeClerque, and Matthews, and Delores Passmore Kori Eberle Ratney

Healthy Start: Capturing Lessons Learned

Per the Division request, the CoIIN will focus their efforts for the time being on: 1) ensuring readiness of programs to fully engage in the national evaluation; and 2) focus on capturing timely feedback from the field to inform planning for the future of the Healthy Start program.

Survey and Report Timeline Response Rate

Number of Responses Percent Response Rate

Total Responses N=84 84/100=84% Level 1 N=45 45/60=75%

Level 2 N=21 21/22=95%

Level 3 N=18 18/18=100% Lessons Learned Findings Cross-Cutting Themes

• Healthy Start’s commitment to providing community-responsive, participant-centered services that address social determinants of health through coordination with community connections. • The importance of fostering participant empowerment through personal connection and promoting the health literacy of participants with complex needs. • The value of data for performance monitoring and improvement, as well as the challenges of data collection. • Male Inclusion/Fatherhood was raised as a challenge. • The importance of and challenges related to participant engagement. • The critical value and challenges of recruiting and retaining a strong, competent workforce through professional development. • The importance of the client-case manager relationship. • Structural flexibility as a core strength in Healthy Start’s ability to be responsive to participants’ needs.

Summary

The focus of the HS CoIIN during this period is working toward: • Healthy Start as promoting equity; • Healthy Start as a standardized system of care; and • Standardization as a strategy for sustainability.

Questions/Thoughts/Discussion

Host Grantee Presentation Kori Eberle, MS Sarah Williams, BSW, LVN, CHW Roxanne Torres San Antonio Healthy Start

60

Healthy Start Background

• Started in San Antonio in 2001 • Grant funded by Health Resources and Services Administration (HRSA) • A member of the Texas Healthy Start Alliance (TXHSA) • 9/1/2014 received $9.7 million grant to use over next 5 years • Beginning our 4th grant cycle • We are 1 of only 18 level 3 grantees in the US • In 2011, formed Healthy Families Network (HFN)

Thriving Communities, To strengthen families, empower neighborhoods, Strong Families, and and improve health and Healthy Babies community services so that all babies have an equal chance to live and thrive

Equal Chances

2013 Bexar County Infant 2011 Rate Comparisons Mortality Rate • US Infant Mortality Rate was 6.05 and ranked higher than 27 other countries across the globe 6.02 • Texas Infant Mortality Rate was Infant Mortality is the death of a 5.70 baby before his or her first

birthday • Bexar County Infant Mortality The Infant Mortality Rate is Rate was 4.86 measured as the number of infant deaths per 1,000 live births • Healthy Start Infant Mortality rate was 3.09 for all participants from 2002-2013

Comparison of Infant Mortality by Nation

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Who is Eligible? • Women who are pregnant.

AND

• Live in target area, determined by census tract.

Use Website to determine https://geomap.ffiec.gov/F FIECGeocMap/GeocodeMa p1.aspx

What We’re doing…In the Home

• Individualized case management and home visitation that continues from pregnancy until baby turns 2 • Parenting and Health Education • Screenings for Maternal Depression and Infant Development • Community Resources and Referrals • Monthly “Parent Talk” Groups and Activities • Healthy Start Rewards program • Using evidence-based curriculums

That’s a lot of work to do….. Who is doing it all? Healthy Start Leadership Team

Kori Eberle Program Manager

Lori Sandoval James Counts VACANT Community Outreach Manager Office Manager Social Services Manager

Amanda Murray Suzanne Tejeda Vanessa Rodriguez John Duah

Neighborhood Coalition Social Services Engagement Epidemiology Coordinator Supervisor Supervisor Coordinator Satellite Offices

1 Case Manager

1 Neighborhood Organizer

1 Administration Associate Case Managers WEST NORTH SOUTH

Sarah Williams Monica Encina Priscilla Battaglia Case managers work with HIGH RISK program participants . High James Counts risk indicators include: homelessness, current drug or alcohol use, HIV positive, a victim of domestic violence, have an open CPS, or have a medical condition such as diabetes, high blood pressure, previous infant loss/premature baby. Case managers use the Parents As Teachers curriculum with their participants. Case Social Services managers visit their participants 2 times per month. Manager Outreach Workers WEST NORTH SOUTH

Amelia Medrano Alecia Sonnier Vacant

Outreach workers work in the community to recruit and enroll James Counts program participants. They utilize the Becoming a Mom/ Comenzando Bien curriculum to educate prenatal women in group sessions at partnering agencies. Outreach workers live in the communities they serve and are working to improve the birth outcomes of their neighbors through community outreach and Social Services education. Manager Case Workers Cont. Case Workers work with all other moms and utilize the Partners for Healthy Babies curriculum. Case Workers visit their participants at least 1 time per month. In addition, Case workers live in the service areas where they work and foster the idea of building thriving communities by strengthening families through education.

Suzanne Tejeda

Social Services Supervisor What’s new? • Eligibility is now determined by census tract, previously zip code • Satellite offices throughout city for ease of access • Each office will have its own Healthy Start Store to redeem Healthy Start Rewards points • Starting group classes for our fathers • Establishing a neighborhood engagement approach to improving birth outcomes

Male Services Specialists

Peter Moore

The male services specialists works in all the service areas. He uses the 24/7 Dad and Dr. Dad curriculums and teaches VACANT in group settings. He works with husbands, fathers, Community partners and step-fathers that are involved with the Outreach mother and infant to encourage positive and supportive Manager male involvement. What We’re doing… In the Community and Beyond • Resident Leadership Teams – Organizers help Healthy Start neighborhoods improve their overall health • Healthy Families Network – meets monthly to work on risk factors we know cause prematurity or infant loss • Data Analysis – teams of specialists & Healthy Start neighbors come together to investigate fetal and infant deaths that need a deeper look • Mentor other Healthy Start projects across the nation

Neighborhood Organizers WEST NORTH SOUTH

Vacant Yandiry Mlakar Isela Conchas Utilizing the Asset Based Community Development model, Neighborhood Engagement personnel will Vanessa Rodriguez work with the entire community including grandmothers, aunts, uncles, and neighbors to promote healthy pregnancies and Healthier Neighborhood Engagement families in effort to working toward our mission. Supervisor

Administrative Associates WEST NORTH SOUTH

Roxanne Torres Teresa Flota Christina Cervantes Administrative Associates work as the face of Lori Sandoval the Healthy Start program and provide excellent customer service to our participants. They are responsible for all data entry, inventory management and are the HS Store Managers each site. Office Manager

Epidemiology Coordinator Coalition Coordinator

John Duah Amanda Murray

Coordinates the data analysis used Coordinates the Healthy Families by Metro Health to help answer the Network and annual Baby Buggy why’s, how’s and when’s that we all Walk in the Park and 5K wonder about when a baby passes away. Healthy Start uses information from many sources, including talking to neighborhood residents and data from birth and death certificates.

Baby Buggy Planning Committee An infant and pregnancy loss remembrance event, held in October. Featuring a 5K, 1 mile walk, health and baby expo, kids fun zone and toddler race. Everything is free, open to the community, and lots of fun.

West Office - 515 Castroville Rd SA, TX 78237

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0 North Office Review • All services are free • Visitations are done in-home • Monthly “Parent Talk” get together at each satellite office • Individualized case management • Mother screenings for depression and infant screenings for development • Services from pregnancy until the child turns age 2 • Resources and referrals to other community agencies • Parenting and health education using evidence-based curriculums • Group classes for dads • Staff trainings and community-wide education

Questions?

Thank you! San Antonio Healthy Start https://prezi.com/view/4IgsTF5jNEV4BzgfejvJ/

Networking Lunch 11:45 – 1:15 PM

Poblanos On Main 115 S Main Plaza

92 Productive State Data Partnerships Jason Salemi, PhD, MPH REACHUP Rita Espinoza, MPH San Antonio Healthy Start

93

Productive State Data Partnerships

Jason L. Salemi, PhD, MPH Department of Family and Community Medicine Baylor College of Medicine Department of Epidemiology and Biostatistics College of Public Health, University of South August 10, 2017 Disclaimer!

. As part of the national evaluation of Healthy Start, HRSA is making a concerted effort to:  Establish a relationship with each state’s vital records office (VRO)  Establish a mechanism by which the VROs can use their expertise in data linkage to link program data to vital records

Reports, Evaluation

This presentation is NOT designed to address this effort 95 Who this talk is targeted to

. This presentation IS designed for programs who:

Program & Collaborators Develop Reports, Evaluation

96 Objectives and Agenda

1. Begin at the end  Fruits of productive state parternships (the FL experience) − Establish public health surveillance system − Investigate the impact of environmental exposures on health − Government-funded data infrastructure for evaluation, research − HEALTHY START PROGRAM EVALUATION!

2. Challenges associated with data access, data linkage  Data use agreements, IRBs, authority, identifiers  Data management and data linkage expertise  General strategies to overcome (they will vary by state)

3. Open forum for discussion, Q & A 97 FRUIT #1

Establishing a cost-effective, population-based, statewide surveillance system

The Florida Birth Defects Registry Surveillance is IMPORTANT!

. Surveillance: “ongoing, systematic collection, analysis, interpretation, and dissemination of data regarding a health- related event to reduce morbidity and mortality and to improve health”

. Birth defects surveillance data can be used to:  Provide baseline prevalence data  Monitor changes in occurrence  Investigate clusters  Identify populations at increased risk  Aid in referring affected children/families to services  Evaluate prevention programs  Serve as basis for epidemiologic research

99 Approaches to case ascertainment

. Lie on a continuum from passive to active

Passive Active

100 Constructing a passive surveillance system

Inpatient Outpatient Children’s EmergencyPerinatal Infant death Early Steps hospitalization discharge Medical Intensivedepartment Care certificates data records records Services data dischargeCenter recordsdata

Only keep those records that link to a live birth certificate record

Scan for ICD-9-CM codes indicative of a birth defect (740-759 range and selected others)

Infant is added to the registry

101 The surveillance continuum

Passive Active

Enhanced Statewide surveillance registry projects

102 Vital records important for enhanced surveillance Review Request medical Review and Diagnosis case lists records abstract

Down syndrome ICD-9 758.0 BPA-FL: 758.000 758.040 Compile and etc. disseminate findings Link to birth cert Confirm, document, code 103 Annual publication of counts, rate of defects

104 County/Regional Profiles

105 Education through our website

106 Florida CHARTS

107

FRUIT #2

Environmental Public Health Tracking

Linking environmental exposures to health effects What is Environmental Public Health Tracking?

The ongoing collection, integration, analysis, interpretation, and dissemination of data from:

1) environmental hazard monitoring

2) human exposure and health effects surveillance

109 Vital records are key!

• Sources of potential data  Direct querying of catchment area hospitals − Submit inclusion criteria to staff within Health Information Management department at hospital − Potential cases generated by each hospital querying their information management system

Use of vital records to find potential cases − Birth certificates − Infant death certificates − Fetal death certificates

110

Enables publicly-available data!

111

FRUIT #3

Establishing a data infrastructure for evaluation and research

AHRQ R01 Linking Maternal and Child Health Data to Create a Comprehensive Longitudinal Dataset: The Florida Experience Data-Driven Decision Making… needs data!

113 Data linkage

114 “Follow” Infants Over Time Through Linkage

Inpatient Emergency Birth Hospitalization #2 Room Visit

Inpatient Outpatient Death Hospitalization #1 Ecounter #1

115 “Follow” Moms Over Time Through Linkage

Inpatient Delivery #1 Hospitalization #2

Inpatient Outpatient Delivery #2 Hospitalization #1 Encounter #1

116 Data linkage

117 https://www.drugabuse.gov

FRUIT #4

Timely responses to emerging health issues

Opioid epidemic and neonatal abstinence syndrome NAS

119 Vital records still important!

. Statewide

. Florida hospital inpatient birth discharges linked to birth certificates

. Inpatient birth discharge documentation of NAS diagnosis resulting in an assigned ICD-9-CM code of :  Drug withdrawal syndrome in a newborn (779.5)  Narcotics affecting fetus or newborn via placenta or breast milk (760.72)

120

FRUIT #5

HEALTHY START! History of Current Linkage

. Evaluators for CHHS have had a DUA with FDOH Vital Statistics Office since 2008

. The DUA has been (and must be) renewed annually

. Data linkage is critical for strategic planning  Measuring progress toward benchmarks and outcomes

. Enhances program evaluation  Has resulted in a myriad of reports and numerous publications

122

123 Some highlights of program evaluation

Program. Reduced Evaluation very low birthweight and preterm birth risk by approximately 30% among CHHS program recipients

. Lowered the likelihood of very preterm delivery by 61% among obese mothers in the CHHS program

. Decreased teenage pregnancy in the CHHS catchment area by nearly 30%

124 Demonstrating Success

. Changing Lives Demonstrating Reduction in infant Success mortality by 57% from 1998 to 2015

. Closing the Gap  The infant mortality gap in the CHHS catchment area narrowed from 72% in 2010 to 6% in 2015 compared to the rest of the state, and was eliminated when compared to the rest of Hillsborough County

125 Value Added

. Success in effectiveness evaluation has strengthened the Valuerelationship Added between REACHUP/CHHS and FDOH Bureau of Vital Statistics  History of successful data linkage and stewardship was critical in securing data use renewal following personnel/policy change

. Linked data infrastructure has enhanced funding potenial for academic and community partners  HS data was used to secure multi-year funding for USF Center of Excellence in Maternal and Child Health

. Collaborative relationship with FDOH has provided training and mentoring opportunities for university students

126

The Challenges

1. The paperwork 2. The access 3. The expertise 4. The sustainability 5. The cost? Challenges

1. Go over the initial process in getting the agreement in place and for them to discuss the process of sharing client’s data. 2. How they handle the IRB component would be helpful. 3. Learn about each other’s communication structure with their state vital records office and current data sharing mechanisms between the state and local level 4. Difficulty with reaching Vital Records.

5. Explore the possibilities of grantees within a state coordinating the submission of Linkage Variables to state VRO for HRSA Evaluation Study 6. Understand/Clarify the role of “Abt” and “NAPHSIS” in coordinating with the state VRO for the HRSA Evaluation Study 7. Receive an update, if any, about the CA VRO review process of the HRSA Evaluation Study 128

Know that you are not alone!

. Survey of all 52 vital records jurisdictions (50 states, DC, NYC) and all SSDI coordinators . Conducted in 2012 with help of NAPHSIS and AMCHP . 100% response rate from vital records offices, 96% response rate from SSDI coordinators . Less than HALF reported that some organization (health department, university) had linked birth certificates and discharge data in past 4 years… 4 did not know whether linkage occurred 129 Know that you are not alone!

. Among VROs who DO link (n=22):  73% of those who link would collaborate with others to overcome barriers . Among VROs who DO NOT link (n=26):  43% want to link  62% would be interested in collaborating with other states to learn about the linkage process 130

The Paperwork

Data use/sharing agreements, IRBs, etc. Data Use Agreement

. Florida Department of Health, Bureau of Vital Statistics

. DUA is required to:  access/receive vital statistics data  link it to participant data

. There may be a fee associated with data use

132 Data Use Agreement (in Florida)

. Project Director . Project Summary . Data Requested and Specifications . Linkage . Security . Data Destruction Schedule . Data Use By Others . Fees . Contact with Human Subjects . All Staff Accessing the Information . Use and Consent of the Data 133

Data Use Agreement (in Florida)

. Project Director . Name, title, contact info . Project Summary . Title, purpose of the project . Intended use of the data . Whether results will be used for publication or presentation (if so, provide details) . Is requested data needed for work being performed under contract with DOH . Data Requested and Specifications

134 Data Use Agreement (in Florida)

. Linkage . Describe linkages to any other data sources . Specify variables to be retained in the linked file

. Security . Windows authentication, firewalls, servers with restricted access, etc . Data Destruction Schedule . Timeline (e.g., within 5 years of project end date) . Overwriting and deleting method (US DoD 5220.22-M), shredding media . Data Use By Others . Refers to any sub-contractors, will need to describe each and they will need their own DUA 135

Data Use Agreement (in Florida)

. Fees . Can often get a waiver or reduction of any fees if the intended use with have a direct health-related benefit to state citizens . Contact with Human Subjects . Will probably describe no contact with participants will result from access to vital records, but that services are provided to participants whose data will be linked to vital records . All Staff Accessing the Information . Lisating individuals, titles, affiliations, and roles in the project . Anyone who will “touch” the data . Use and Consent of the Data . Speaks to ultimate responsibility falling on the primary data custodian mentioned in the DUA

136

Data Use Agreement (in Florida)

BIRTH FILES FATHER_ED DEATH_COUNTRY_CODE EVENT_YEAR FATHER_EDCODE RPT_DATE_OF_DEATH CERTNUMBER FATHER_OLD_EDCODE RPT_DOD_MONTH BIRTHID MOTHER_SSN RPT_DOD_DAY NAME_FIRST HOME_BIRTH_PLANNED RPT_DOD_YEAR List of VariablesNAME_MIDDLE FACILITY_NAME PATERNITY_TYPE NAME_LAST FACILITY_CODE PATERNITY_TYPE_CODE NAME_SUFFIX FACILITY_TYPE_NAME PATERNITY_DATE MOTHER_NAME_FIRST FACILITY_TYPE_CODE MR_DIAB MOTHER_NAME_MIDDLE CHDCountyOfBirth MR_DIAB_GEST MOTHER_NAME_LAST BSTATE MR_HYPERT_CHRONIC MOTHER_NAME_LAST_P BIRTH_STATE MR_HYPERT_PREG MOTHER_RES_ADDR BCOUNTRY MR_HYPERT_ECLAMPSIA MOTHER_RES_APT BCOUNTRY_CODE MR_PREV_PRETERM MOTHER_RES_CITY_CODE BCITY MR_OTHER MOTHER_RES_COUNTY BCITY_CODE MR_NONE MOTHER_RES_COUNTY_COD BCOUNTY MR_UNKNOWN E BCOUNTY_CODE MR_PREV_POOR_OUTCOME MOTHER_RES_CHDCOUNTY_ SEX MR_PREG_FROM_TREATMEN CODE DATE_OF_BIRTH_MONTH T MOTHER_RES_STATE DATE_OF_BIRTH_DAY MR_PREG_FROM_TREATMEN MOTHER_RES_STATE_CODE DATE_OF_BIRTH_YEAR T_FED MOTHER_RES_ZIP DATE_OF_BIRTH MR_PREG_FROM_TREATMEN MOTHER_RES_INCITY TIME_OF_BIRTH T_ART MOTHER_RES_COUNTRY TIME_OF_BIRTH_UNIT MR_PREV_CESAREAN_YESN MOTHER_RES_COUNTRY_CO BIRTH_WEIGHT_UNITS O DE BIRTH_WEIGHT_GRAMS MR_PREV_CES_NUMBER MOTHER_MAIL_ADDR BIRTH_WEIGHT_LBS MR_OTHER_LIT MOTHER_MAIL_APT BIRTH_WEIGHT_OZ CLD_PRECIP_LABOR MOTHER_MAIL_CITY GESTATION_WEEKS CLD_PREMATURE_ROM MOTHER_MAIL_STATE PLURALITY_CODE CLD_PROLONG_LABOR MOTHER_MAIL_STATE_CODE BIRTH_ORDER_CODE CLD_NONE MOTHER_MAIL_ZIP MOTHER_WIC_YESNO CLD_OTHER MOTHER_MAIL_COUNTRY MOTHER_HEIGHT_FEET CLD_OTHER_LIT MOTHER_MAIL_COUNTRY_C MOTHER_HEIGHT_INCH CLD_UNKNOWN ODE MOTHER_PRE_PREG_WT INF_OTHER MOTHER_BIRTH_COUNTRY MOTHER_WT_AT_DELIV INF_OTHER_LIT MOTHER_BIRTH_COUNTRY_ WEIGHTGAIN INF_GONORRHEA CODE FATHER_RES_SAME_MOTHE INF_SYPHILIS MOTHER_DOB_MONTH R INF_CHLAMYDIA MOTHER_DOB_DAY PRINCIPAL_SRCPAY_CODE INF_HEPATITIS_B MOTHER_DOB_YEAR PRINCIPAL_SOURCE_PAY INF_HEPATITIS_C MOTHER_AGE INFANT_LIVING INF_NONE MOTHER_ED INFANT_BREASTFED INF_UNKNOWN MOTHER_EDCODE CHILD_MISSING OB_CERCLAGE MOTHER_OLD_EDCODE DEATH_OCCURRED OB_CEPHALIC_SUCCESS MOTHER_MARRIED DSTATE OB_CEPHALIC_FAILED FATHER_NAME_FIRST DSTATE_CODE OB_TOCOLYSIS FATHER_NAME_MIDDLE DEATH_SFN OB_NONE FATHER_NAME_LAST DATE_OF_DEATH OB_OTHER FATHER_NAME_SUFFIX DATE_OF_DEATH_MONTH OB_OTHER_LIT FATHER_DOB DATE_OF_DEATH_DAY OB_UNKNOWN FATHER_DOB_MONTH DATE_OF_DEATH_YEAR CHAR_INDUCTION FATHER_DOB_DAY DEATH_COUNTY CHAR_AUGMENT FATHER_DOB_YEAR DEATH_COUNTY_CODE CHAR_NON_VERTEX FATHER AGE DEATH COUNTRY CHAR STEROID 137 Institutional Review Board (IRB)

. IRB is a committee established to review and approve research involving human subjects

. The purpose of the IRB is to ensure that all human subject research be conducted in accordance with all federal, institutional, and ethical guidelines

. The evaluation component of our program requires IRB approval and informed consent.

138 Institutional Review Board (in Florida)

. May require multiple institutions (local, state) . A lot of overlap with DUA, but most likely requires additional info . Some IRBs require that DUAs have been submitted, approved . Though sometimes the opposite can be requried

. Study title, description . Often a lot of details, including a study protocol . Investigators and co-investigators . Requires training in human subjects protection . Requires CV/resume/biosketch . Detailed methods, instruments, analytic protocols/evaluation . Risk & benefit assessment, informed consent . Privacy & confidentiality 139

Recommendations

. Reach out to VROs for guidance on completing the DUAs/IRBs

. Seek out collaborators or other universities or orgnaizations within your state who have successfully completed DUAs/IRBs

. More helpful since paperwork will be the same

. Seek help from other state partners

. Although paperwork in your state may be different, the general approach to answering questions will be the same

. Be patiently and politely persistent when contacting VRO staff for guidance or updates on submitted paperwork

. Use the expertise of the VRO and IRB staff

. Most DUAs and IRBs require annual renewals 140

The Access

Surveillance authority Surveillance Authority

. Florida Statute 381.0031  Made congenital anomalies reportable to the state on July 4, 1999

. Administrative Rule  Rule 64D-3.035, Congenital Anomaly Reporting

. Key Elements  Allows the FBDR to conduct birth defects surveillance, including the abstraction of information from medical records  Includes the diagnosis of a congenital anomaly diagnosed between 20 week gestation and one year of age  Mother must be a FL resident at the time of pregnancy outcome

*Actively working to improve language and move from FBDR-initiated requests to provider/hospital-required reporting

142

The Expertise

Data linkage is often not straightforward, not easy, and not quick Linking Mechanics . Developed a SAS macro . Hierarchical, stepwise series of linking stages, using various combinations of variables, proceeding from highest to lowest confidence  Exact and partial matching, linking with replacement  Primarily deterministic, includes probabilistic elements  CREATES potential matches . Coding algorithm to calculate a “linking confidence” score to GRADE matches  Also incorporate a “delivery confidence” score . Records above a certain score are SELECTED as links, borderline scores require manual validation  May find false + we need to CORRECT  We try to minimize manual review 144 Linking Mechanics . We do not use blocking  Too concerned about flawed data  Linking approximately 230,000 birth hospitalization records to approximately 1.4 million “women” records using the merging macro takes approximately 1 hour − Will sacrifice extra time for greater sensitivity . SAS  Not as automated or “point-and-click” as other software  Extremely customizable through coding  Easy to incorporate a large number of variables (Link King)  Easy to allow “crossover” links − Mom’s SSN in AHCA links to father’s SSN in vital stats  Can process extremely large datasets quickly given powerful computers 145 Additional Challenges . Disentangling multiples (twins, triplets, etc)  No infant SSN, no names in hospital data  Multiples will share all mom characteristics  Ordering of variables in AHCA does not match birth order  Can use sex to differentiate between opposite-sex dizygotic twins  Can use diagnosis codes that reflect 500 gram birth weight categories to disentangle same sex multiples that may differ in birth weight  For multiples that have the same sex, similar birth weights, it may be impossible to determine, given the available data, which hospital record goes with which birth record − Investigating other options − Random assignment − Allocation to “family” as unit 146 Recommendations

. Don’t underestimate the effort, time, and resources needed to design and implement a thorough data linkage protocol

. Secure necessary data linkage expertise by:

. Hiring staff

. Collaborating with experienced partners (e.g., university)

. Leverage expertise of VRO staff

. Fund external contractors

147

The Sustainability

The processes require annual renewals and modifications to include current data on most recent participants Recommendations

. Be thorough with completing all required paperwork . Start on renewals and new requests early . Don’t be late on submitting renewals . Maintain highests levels of data stewardship (protecting confidentiality, no breaches of data, adhere to agreed upon safeguards, policies, data storage/destruction) . POLITE persistence when needed

149

The Cost?

Can be “free” (depending on how you define free) May have various costs (for VROs to pull data, for data linkage experts, etc) Thank you

. Estrellita “Lo” Berry . Hope Tackett

. Roneé E. Wilson . Alfred K. Mbah

. Hamisu M. Salihu . Jason L. Salemi

Florida Department of Health . Marie Bailey . Karen Freeman . Jane Correia . Melissa Murray Jordan . Danny Irwin 151

Partners’ Panel: Discussion with Key MCH System Partners Angela Montez, BSN, RN, Co-Chair, Texas Home Visiting Coalition Jeremy Triplett, Title V Maternal and Child Health Director, TX Department of State Health Services Rosemary Fournier, BASc, RN, FIMR Director, National Center for Fatality Review and Prevention Audrey Rost, Nurse Supervisor, BSN, RN, NFP Catholic Charities Archdiocese of San Antonio

152 Panel: highlighting partnership, collaboration and commitments Healthy Start Regional Meeting San Antonio, August 10 & 11, 2017

When Vital Statistics alone cannot tell us the story . . . .

. . . Communities turn to FIMR to tell us how and why babies are dying

Fetal Infant Mortality Review

Data Gathering Changes in Community Systems

The Cycle of Improvement

Case Review Community Action The FIMR Process

FIMR brings a multidisciplinary community team together to examine confidential, de- identified cases of infant deaths.

FIMR Goals

• To examine significant social, economic, cultural, safety, health and systems factors that are associated with mortality • To design and implement community- based action plans founded on information obtained from the reviews The Maternal Interview

• Gives insight into the mother’s experience before, during, and following pregnancy • Conveys the mother’s story of her encounters with local service systems FIMR: A two tiered process

CRT CAT

Case Review Team Community Action Team FIMR: A Public Health Model

Fetal and Infant Deaths Selected

Maternal Interview Conducted

Records Abstracted & Summarized

FIMR Team Reviews & Makes Recommendations

Community Action Team Prioritizes and Takes Action

Improved Systems, Services & Resources for Families

Improved Health of the Community

FIMR Today

• FIMR has a presence in 29 states, DC and • 175 local programs • Tribes plan and participate in FIMR in MT, WI and WY – MI Intertribal Health Council has own FIMR

175 FIMR Programs in 29 States, DC, and Puerto Rico

Maine

North Dakota New Hampshire

29 New DC - 1 York

South Rhode Dakota Island 7 New 1 11 Jersey

Iowa 1 4 1 24 2 2 10 West 7 1 Virginia

1 Colorado 1 California 1

1 2 1 North 16 4 Carolina 5 South Carolina New Arizona Mexico 1 2

6 3 Texas

Louisiana 3 Florida 9 18

Hawaii Puerto Rico - 1

© FreePowerPointMaps.com Community Empowerment

Through the fetal-infant mortality review process, the community becomes the expert in the knowledge of the entire local service delivery systems and community resources for childbearing families. Fetal and Infant Mortality Review (FIMR)

• What are the key areas of collaboration and/or alignment between your program and Healthy Start? Components of the FIMR Process are especially valuable to Healthy Start:

• Diverse coalition/community partnership Building

• Inclusion of home interview with mothers who have lost their babies

• Outcome interventions – based on the findings of the review team, the community and the families who live there. FIMR as Partner

• Enhances ability of communities to work together. • Brings players to a common table and improves communication among health and human service providers • Provides community specific information about changing health care systems How FIMR and Healthy Start may work together

• FIMR findings may spur a community to apply for a Healthy Start grant • Healthy Start may fund FIMR in whole or part • FIMR may ask the Healthy Start CAN to act as its FIMR community action team (CAT) • Healthy Start members may serve on the FIMR Community Review Team (CRT) and or Community Action Team (CAT). Fetal and Infant Mortality Review (FIMR)

• What, if any overlap exists, with respect to benchmarks, program measures, data collection efforts, etc. between what your program uses to measure success and Healthy Start? Fetal and Infant Mortality Review (FIMR)

• Performance measure 19: Increase the proportion of HS grantees who establish a quality improvement and performance monitoring process to 100%.

Fetal and Infant Mortality Review (FIMR)

• FIMR is the ultimate CQI process: identify problems, analyze underlying factors contributing to the problem, re-design system approaches or resource allocation to resolve the problems, and subsequently determine if change in the process is successful.

Fetal and Infant Mortality Review (FIMR)

• Increase the proportion of Healthy Start women participants that receive a well-woman visit to 80% – FIMR Collects information on % of cases reviewed where mothers have chronic health conditions and lack regular well women visits

• San Francisco and Alabama

Fetal and Infant Mortality Review (FIMR)

• Increase the proportion of Healthy Start Women participants who engage in safe sleep practices to 80% • FIMRs may have information on “missed opportunities” for safe sleep education • Maternal interviews reveal why moms/families may be unable or unwilling to practice AAP guidelines for Safe Sleep Fetal and Infant Mortality Review (FIMR)

• What are some innovative approaches that you are currently implementing or exploring that are important for the Healthy Start Community to know about? Using FIMR Methodology to review other Maternal Child Health Sentinel Events

• Reviews focus on morbidity, not limited to mortality • Examples: – FIMR – FAS – Congenital Syphilis (Maryland) – FIMR HIV (FHPM) – Pre-term/low birth weight births (Indianapolis)

FIMR - FAS

• In 2004, The CDC (National Center for Birth Defects and Developmental Disabilities) and NFIMR funded 2 pilot projects to examine ways to adapt the FIMR process to prevent Fetal Alcohol Syndrome Disorders – Detroit, Michigan – Baltimore, Maryland • Cases were reviewed of women who consumed alcohol during pregnancy and had a fetal or infant loss, and any woman who consumed alcohol during pregnancy and had a live born infant FIMR - FAS

• Both Detroit and Baltimore found a need to raise awareness among health and human service providers and community members on the adverse effects of alcohol use during pregnancy • Detroit focused on increasing availability and access to contraception for women at risk of delivering an infant with FAS • In Detroit, review of post neonatal deaths found that parents using alcohol at the time of the infant death contributed to un-safe sleep related deaths. FIMR HIV Prevention

• City MatCH, in collaboration with CDC and ACOG, modified the FIMR methodology to investigate and address barriers to further reduction of mother-to- child HIV transmission in communities. • This examination allows communities to identify missed opportunities for prevention and implement improvements to systems of care for women who are HIV-positive. Fetal and Infant Mortality Review (FIMR)

• Describe community-based strategies and actions that either have been successful or are in planning that address health equity. Formation of a Disparities Work Group for CDR and FIMR

• Purpose: To focus on FIMR and CDR reviews in communities with high health disparities, including conducting analysis and recommendations to improve outcomes • Mission: We hope to use the information from our review processes to inform communities on factors that contribute to disparities in infant and child outcomes, and, most importantly, to create tools and best practices to help communities translate those finding into action

FIMR/CDR Disparities Work Group

• More than 40 members • Representation from 20+ states • Diverse Membership • Support from national organizations – HRSA – ACOG – NACCHO – National Birth Equity Collaborative (NBEC) – Center for Health Equity Practice, MPHI Baltimore - Moving the Needle on very Pre- term Births

• Baltimore City FIMR: focusing on addressing racial disparities in fetal-infant mortality, shifting to a deeper emphasis on structural racism and other upstream factors underlying the disparities • The B’more for Healthy Babies team (the FIMR CAT) has gone through the Undoing Racism workshop with The People’s Institute for Survival and Beyond • Through the Maternal Interviews, the Baltimore FIMR project is also seeking to better document and understand mother’s experiences of racism during pregnancy and throughout the life course Community Family Planning Outreach Program in Kent County, MI

• FIMR reviews revealed that a high percent of Black infant deaths due to prematurity and low birth weight were associated with pregnancies that were un-planned and closely spaced • Women has difficulty accessing affordable, culturally appropriate Family Planning services

Community Family Planning Outreach Program in Kent County, MI

• Community Action Team received state funds to engage hard-to-reach African American women in Family Planning services • Trained 53 non-traditional leaders and members of six community-based organizations in Family Planning

Courtesy of Kent County, MI Strong Beginnings Community Outreach Program

Peer educators held interactive discussions with groups of women within their social networks (280 A-A women educated on Family Planning in small groups of 10-15)

Courtesy of Kent County, MI Strong Beginnings

What’s one key action step participants can take to foster a partnership?

• FIMR findings drive perinatal initiatives by giving a voice to local families who have lost a baby and ultimately leads to better health care of women, children, and families.

• Prevention!

Facebook and Twitter

Questions?

Rosemary Fournier FIMR Consultation and Technical Assistance: [email protected]

Break Time!

188 Skills Building Session 1, Part 1: Assessing Impact Sylvia Cheuy Tamarack Institute

189 Closing Day 1 & Reminders Madelyn Reyes, MA, MPA, RN Sonsy Fermin, MSW, LCSW Division of Healthy Start and Perinatal Services

190 The Healthy Start Screening Tools Insights, Strategies, and Tips

1. How successful do you feel you've been so far in implementing the screening tools? 2. Are you getting more comfortable with them? 3. Up to now, what have been your biggest challenges with the tools? 4. What strategies are you finding most successful for managing them? 5. Are there some things you anticipated would be challenging that turned out not to be?

Good Morning: Let’s Get Moving! Isela Conchas San Antonio Healthy Start South Neighborhood Organizer

192 Welcome Back! Day 1 Recap Madelyn Reyes, MA, MPA, RN Sonsy Fermin, MSW, LCSW Division of Healthy Start and Perinatal Services

193 Skills Building Session 1, Part 2: Building Sustainability Sylvia Cheuy Tamarack Institute

194 Break Time!

195 Skills Building Session 2: Healthy Start Screening Tools: Insights, Strategies, and Tips Jan Shepherd, MD Naima Cozier, MPH Healthy Start EPIC Center

196 The Healthy Start Screening Tools Insights, Strategies, and Tips

Jan Shepherd, MD, FACOG

Make It a Conversation

. Provide opportunity for give and take . Be flexible but focus on achieving goals Data Collection Reminder

Strive to obtain the best information you can, but remember that self report is never 100% accurate

Addressing Sensitive Issues Approaching the Questions

. Many of the most significant risks in the perinatal period involve sensitive issues: drug and alcohol use, domestic violence, sexually transmitted diseases, etc. • Emphasize that obtaining information about these is essential to providing the best possible care • Don’t apologize for asking! . Tell the participant that you’d now like to ask some sensitive questions “if it’s okay” • Make sure she understands that you ask these questions of all women • Assure her that her answers are confidential and will only be used to support her

Approaching the Questions

. Maintain a confident and matter-of-fact tone to normalize the conversation . Be aware that different questions may seem sensitive to different women . Be conscious of your own reaction to the questions • You may have experienced similar situations • You may already be aware of the participant’s circumstances

Objectivity

. Nonjudgmental • Provider judgment is the top reason women choose not to disclose • There are no “right” or “wrong” answers • Open to whatever the woman says . Avoid prejudices and preconceptions • Expect the unexpected • Frame questions without bias, e.g. “You don’t drink, do you?” Respect

. Valuing an individual’s traits, beliefs, and culture even when they conflict with one’s own . Recognizing them as valid responses to life circumstances . Understanding that when a woman declines to answer or responds “don’t know”, there is likely a reason

Respect

. Don’t push too hard. If you can maintain rapport, you may get a response later. . If the questions seem to be getting too stressful, consider offering to complete the screen at another time.

Genuineness

. It’s OK to say things like “I know what you mean. I have young children too.” “I’m so sorry to hear that.”

Empathy

. Different from sympathy, which is an emotional response - feeling sorry for someone . Empathy is the ability to sense someone’s experience and feelings accurately and communicate that understanding back to them . Demonstrate empathy by really listening, then rephrasing what the woman has said, e.g. “I can see how hard it has been for you to control your smoking with all the stress you’re under.” Nonverbal Communication

. Look up from the screening tool! . Make eye contact (but don’t stare) . Lean forward to show you’re listening . And note the participant’s body language

Nonverbal Communication

. Note signs of the participant’s and your own level of discomfort • When a woman looks away or gets teary, it’s likely a clue to her response. Give her time to collect her thoughts. It’s ok to remain quiet for a while. • If you feel yourself tensing up, take a deep breath and try to remain calm and objective.

Handling the Questions about Medical Conditions & Medications Medical Conditions

. The conditions listed in the screening tools can pose significant risk to the baby, the mother, or both. . They need to be on record so Healthy Start can • Emphasize the unique importance of prenatal care in these situations • Follow up on clinic visits and medication recommendations Medical Conditions

. Use the simplest possible terms when asking about the conditions • Most participants are familiar with the common problems, e.g. high blood pressure, diabetes, sickle cell, etc. • The names of rarer conditions, such as lupus and PKU, are familiar to women who have them . A job aid with links to more information on conditions and medications is available at healthystartepic.org Medications

. The medications mentioned in the screening tools can cause problems in the fetus . It is important that Healthy Start recognize participants who are taking these so they can be advised to discuss them with their healthcare provider . A Healthy Start worker can then follow up with the participant Medications

Medications that can cause birth defects should be stopped preconception, if possible . Accutane for acne . Blood thinners . Cancer drugs . Drugs to lower cholesterol . Male hormones . Many seizure drugs . Prescription pain medicines . Some blood pressure medications . Some psychiatric drugs

Interventions

. Many of the questions contain check boxes for education and referrals This is where the tools become operational . Continue the conversation. Maintain your role as a resource sharing information. • Never lecture! • See this as an opportunity for education and discussion about potential health and safety risks • Elicit the woman’s understanding of and reaction to the information, and her likelihood to follow up

Timing

. These are long forms • Plan enough time and set time expectations with the participant • Keep the participant (and yourself!) on topic • Offer to take a break if needed . You don’t have to complete the tool all at once • Get as far as you can and schedule another appointment within 30 days • But the sooner you complete it, the more time you’ll have to meet the woman’s needs Conclusions

. The screening tools were developed to • Standardize Healthy Start practices across the nation • Ensure that all Healthy Start participants receive a comprehensive screening of their risks and needs • Enable customized care coordination for each Healthy Start participant . But they can also • Enhance your relationships with participants • Help you grow in knowledge, confidence, and competence Networking Lunch 12:30 – 2:00 PM

218 Skills Building Session 3: Grooming for Leadership: A call to action for all staff and program participants Maria Reyes, MD, MPH California Border Healthy Start

219 Grooming for Leadership: A call to action

Healthy Start Regional Meeting San Antonio Texas 2017 Grooming for Leadership: Self, Staff & Program Participant To HELL with THE JOB!

Let me be selfish! WHAT GOT ME HERE WON’T GET ME THERE! SELF Reflection Passion

Mission WHO AM I? 5 minutes reflection

Time to reflect on your LEGACY!

How do you want to be remembered by?

What would you like to write on your tombstone? WHO YOU THINK YOU ARE DETERMINES

What your TEAM is What you will achieve What you will become Need

REALM Passion Want OF SELF

Person al Mission Statem ent ARE YOU BEING CHALLENGED?

REFLECTION

1. What do you want? 2. What do you need? 3. What are you passionate about? May I suggest an aspirational statement for the next year? Personal Mission Statement: I am dedicated to … ______. STAFF TEST YOURSELF- Think of one staff

1. What are her or his 1. Are you driving her or his strengths? talents towards performance?

2. What are the triggers to 2. Are you driving the talents activate the strengths? towards excellence?

3. What is his or her 3. Are you inspiring passion? learning strategy? What MOTIVATES employees today? 83% said 79% of those recognition for who quit their contributions is jobs cite lack of more fulfilling appreciation as than any rewards the main reason & gifts What is RECOGNITION? 68% found 88% found praise recognition of from managers individual over & 76% found team as from peers as motivating motivating What MOTIVATES employees today?

90% find fun environment as motivating PROGRAM PARTICIPANT What MOTIVATES participants today? Do we truly know where they are in their lives?

Incentives? (Intrinsic vs financial)

????????????? Group Discussion Participant Retention & CAN involvement

Group 1 Group 2 Challenges & Action Steps Best Practices

Reverse topics for each group

Share highlights with all Build their Leadership to Sustain our Outcomes

ASSIST EMPOWER APPLY SUSTAIN Women Empowered; CAN / Case Business / Career Community Care Groups Management Development Leadership • Improve • Build skills • Apply Gained Skills • Build their voice health • Build resilience • Build support • Reach more women • Improve birth • Connect to other networks • Advocate for others and parenting women • Pursue goals • LeadershipCAN / Case experience • CareSet personal Groups • Build self sufficiency CommunityOpportunities • ManagementAccess quality goals • LeadershipIMPACT their services communities

WHAT GOT US HERE WON’T GET US THERE! What is my learning agenda? My Leadership Mantra?

Strategic Thinking Strategic Analysis

Strategic Management

STRATEGIC LEADERSHIP What is my Leadership Mantra? PARADIGM SHIFT TACTICIAN LEADER BRICKLAYER ARCHITECT PROBLEM SOLVER AGENDA SETTER TACTICIAN LEADER Eyes the bottom line Eyes the horizon Plans details Sets Direction BRICKLAYER ARCHITECT Has objectives Has vision Follows the map Creates new roads PROBLEM SOLVER AGENDA SETTER Sees a problem Sees opportunities Does things right Does the right things May I suggest an aspirational statement for the next year?

For yourself

For your staff

For your program participant Thank you!

Maria Lourdes F. Reyes, MD, MPH Lisa Bain, MPH Katherine Selchau, MA PCI Director, US & Border Programs Deputy Director Director , Local Capacity Strengthening [email protected] [email protected] & Collective Impact g [email protected] Closing Remarks & Reminders Madelyn Reyes, MA, MPA, RN Sonsy Fermin, MSW, LCSW Division of Healthy Start and Perinatal Services

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